Friday, July 08, 2011

The Good Caregiver by Robert L. Kane

"Hope I die before I get old (Talkin' 'bout my generation)--"My Generation," The Who
Elder Care in the U.S. is inadequate.

When an aged relative became seriously ill, we were suddenly long-distance caregivers. We knew nothing about the health care options for a person who could no longer live on his or her own.  We only vaguely understood the differences between assisted living and nursing homes. As you can imagine, some assisted living facilities have excellent amenities.  Others do not.  Unfortunately, it is all too easy for a novice to get conned by slick facilities competing for the business of our aging population. 

The designated primary long-distance caregiver chose the first place he visited, a facility owned by a commercial real estate management and development company.  The rest of us, being good, if reluctant, shoppers, had our doubts.  According to Robert L. Kane's The Good Caregiver, real estate development-owned assisted living places are sprouting up all over the country to cash in on the burgeoning demand for Elder Care. Sometimes the buildings look good, but these unregulated facilities don't always deliver on care.  Of course there are many excellent ALFs, but it's buyer beware.  

It turned out there was no communication between the Place That Shall Not Be Named, her doctors, and the main caregiver. I was horrified on a recent visit when I accompanied the relative to a doctor's appointment and learned hospitalization had been recommended by her primary doctor a week ago, that neither I nor the Place knew anything about the recommendation, and that the nurses had only learned the extent of her weight loss from the driver. 
Is this the place for your relative?  She is in the hospital again. 
In despair I bought The Good Caregiver:  A One-of-a-Kind Compassionate Resource for Anyone Caring for an Aging Loved One, by Robert L. Kane, M.D, Director of the Center on Aging at the University of Minnesota.  This short accessible handbook can help anyone struggling to make good decisions about long-term care for aged relatives.
Kane writes about family self-assessment, dementia, home health care, visiting nurses and aides, case managers, common illnesses, money and the law, and the differences between assisted living facilities and nursing homes.  He provides excellent checklists and interview questions, and the appendix has a helpful list of websites and resources.

Who knew that home health care could be arranged even for people with Alzheimer's?  That  assisted living facilities are unregulated, that some look good but are run by cynical developers, and that all must be investigated on a buyer-beware basis?  Who knew that nursing homes (which also vary significantly and must be shopped for on a comparison basis) are regulated and their ratings available at Medicare Nursing Compare, a database which provides detailed information on the performance of every Medicare- and Medicaid-certified nursing home in the country?  
He also addresses the politics of aging:

"Easy access to quality choices in elder care will require major shifts politically, economically, medically, and individually.

"We need massive citizen demand for reform.  Maybe the time has arrived for this.  After all, things won't get any easier in the coming decades.  Our population is aging, and spending on long-term care for the elderly is projected to more than double over the next thirty years...  No politician is speaking out about this, and meanwhile as pointed out by Peter Strauss, chairman of the Elder Care Task Force of the New York Business Group, the costs of caring for these older people is impoverishing middle-income Americans."
When I called the Center on Aging to get information about the Place That Shall Not Be Named, Kane talked to me on the phone.  He spends an amazing amount of time talking with people about Elder Care. 

His book has helped our family.  Certainly reform is needed so the aged can live out their lives with proper care.


Ellen said...

We know nothing too. There is no attempt to educate the public and it's probably in the interest of those making money off elderly people not to share information. I have the impression one must spend a lot (I mean a lot) to get decent care, but since I've also repeatedly read that some huge proportion of elderly (over 80 say) people have a tiny income (say $18,000 a year at most), I know that there must be care available for poorer people. Many grown children are not in a position to take an Aged P into their house or take care of sometone.

Frisbee said...

It's a mess. Assisted living costs $1500 to $5000 a month, according to one web article. Nursing homes cost about $70,000 a year, according to another article.